Rivaroxaban is not for me, or was it? Aches and pains getting very bad again after 3.5 days off Rivaroxaban.

[Thomas45]

This is a detailed diary of my situation in the hope that someone has a bright idea, or agrees with my logic, as I have no formal medical knowledge.

January 2013

Medication:

For longstanding asthma (38 years): Symbicort 400/12, 2 puffs twice a day, and occasional Salbutamol;

For longstanding Paroxysmal Atrial Fibrillation (17 years): Flecainide Acetate, 150mgs x 2 per day. And 300mgs Aspirin daily. Occurrences of AF in previous 12 months: One 30-minute episode.

For Enlarged prostate (several years): Doxazosin 2mgs per day.

For High? Cholesterol for the over 60s (I’m now 67): Simvastatin 40mg per day

For the prevention of the re-occurrence of nasal polyps (I’ve had 2 nasal polypectomies in the last 30 years): Nasonex 1 puff for each nostril per day.

For High Blood Pressure: Ramipril 5mg at night

For fluid retention: Furesomide 20mg, daily when needed.

My physical state: I could run, walk for miles, lead a normal life free of pains and aches. I’d happily drive 380 miles in a day if needed. I was told by many people that I looked 52 rather than 67

February 2013

I started on 5mg of Warfarin. After 3 days my INR was 2.5, after a week 2.7. The dose was lowered to 4mg (3mg + 1mg). I started to itch. After a fortnight my INR was 1.4. Over the next 14 weeks my dose was increased in stages to 5mg, then 5,5mg, then 6mg, then 7mg. INR managed to rise to 2.0 on one occasion, but rest of the weekly tests it fluctuated between 1.2 and 1.9.

March 2013

My Nasonex was replaced by Avamys, due to longstanding lack of sense of smell. I sometimes forget to take it; in fact haven’t in the last fortnight.

End of May 2013

Warfarin nurse spoke with GP and they decided Rivaroxaban would be better for me. Started it 22 days ago. Within a few days the aches and pains started – lower back pain, leg and knee pain, and in bed especially head, neck, and shoulder pain. Overall general weakness. I also noticed fluid retention in both lower legs. I continued to itch, especially on my fore-arms, with a rash on ,y left fore-arm. The longer I took Rivaroxaban the worse I became. The head, neck and shoulder pain would go off gradually after I’d got out of bed. In bed I ached wherever my body hit the sheet /mattress or duvet, or pillow – wherever there was an element of pressure. Lower back pain and leg ache also when sat in a chair or stood up. The longer I took Rivaroxaban the more immobile I became. Existing rather than living. I contacted doctor and we agreed to give it another fortnight.

Mid June 2013.

The itching continued. Was it Warfarin residue in the body, or Ramipril? Blood pressure taken (145/65, which I thought was good). Put on Losartan potassium 25mg, 1 per day., instead of Ramipril. Blood test arranged for 14 days after I started Losartan. Aches and pains became more severe. I started taking 6-8mg Paracetamol a day to ease the pain. Itching stopped, but waking up at 2am-3am every day in pain. No appetite.

Wednesday 19th June

Saw GP. He could see how immobile I was. I felt 97 rather than 67. He took me off Rivaroxaban, offering one of the other new anti-coagulants or warfarin. I chose warfarin as on it I had no aches or pains, just some itching, which had gone once I’d stopped Ramipril. I was determined to make it work. I ordered a Coaguchek XS machine so I could test myself more often to get in a the best regular pattern of eating to keep INR within range. Doctor arranged full ‘lab’ blood test for the next day. (Warfarin nurse on holiday).

Thursday 20th June

I was more mobile, pains easing. Had full blood tests

Friday 21st June

More mobile still, pains easing. Could get out of bed without kneeling on the floor and forcing myself up holding on to furniture. Drove 80 miles. Bought some botanically brewed Dandelion and Burdock (fizzy). Drank some.

Saturday 22nd June.

Woke up at 3am in intense pain. Just as they were on Rivaroxaban. Bad fluid retention. Aches all over. Took 2 paracetamol, and about 6am 1 Furesomide tablet. Ate a punnet of strawberries and 2 bananas. Had a cup of hot Barley Cup. About 10am took 2 more paracetamol. Got up at 1pm. Ate 2 small yoghurts and 2 more bananas.

16.42: Lower back pain. Aches when trying to move legs, general weakness, neck, shoulder and head ache had eased greatly.

Where do I go from here?

My logic says I was fine before I started on Rivaroxaban, some itches but no pain and no fluid retention. The half-life of Rivaroxaban is short, but how long can it remain in the body?

Is it a combination of several drugs that’s causing the aches and pains?. I feel I need less medication not more.

Will it have dire consequences if I ease off the Losartan until Monday when hopefully I can see a doctor who knows my history? I have a Blood Pressure test booked for Monday with a nurse at the medical centre.

Stopped the fizzy drinks as they don’t help fuild renetion. Still no appetite.

Is it safe to take another Furosemide to get rid of fluid?

Just prised myself off chair to check on my cat. I’m also looking after a friend’s cat. They’re both fine, as long as they don’t meet.

[Thomas45]

Should have made it clear that I contacted Doctor after taking Rivaroxaban for 5 days. It was then agreed there might be 'light at the end of the tunnel' and I'd contunue ti take it for another fornight.

[Terjo]

So sorry you are in so much pain, I feel like you do about medicine , less is more. Do hope you get better soon. Sorry I have no concrete advice, but wish you well. Terjo

[Thomas45]

Thanks Tarjo. It's time to take my tablets. I've had 2 changes of medication in 3 weeks: Warfarin to Rivaroxaban and back to Warfarin, and Ramipril to Losartan. I've decided to give Losartan a miss tonight, and to get BP and INR checked at a Walk-In Clinic tomorrow. Just hope they have a Coaguchek machine. I know that warfarin, which I took at 6.30pm with food, works OK with Flecainide and Simvastatin and Doxazosin, so I should improve overnight, hopefully. And then I'll take some more paracetamol, and have Furesomide handy for tomorrow morning.

[kernow43]

Hi, Sorry to hear of your problems with the medication. I could tell you similar tales of reactions to my meds, but couldn't give any advice. Every one reacts differently don't they. I just wish someone had sat me down and explained the pros, cons, and possible other options before I started on any of mine! I now ask for the ins and outs of every little thing.

Best wishes, don't let the b........s get you down!!

[MarkS]

Hi Thomas,

It is possible that your muscle pain could be linked to the statin you're taking. They're well known to cause muscle pain in some cases, see:

mayoclinic.com/health/stati...

or Google it.

When I was on statins briefly in the past I also took CoQ-10, an over the counter supplement. Google that and statins as well. Alternatively try a different statin or stop and see what happens, with your doctor's permission of course!

I don't think the warfarin could be causing your muscle pain, it's not known as a side effect (as far as I know).

Mark

[Bibbz]

Hi Thomas,

So sorry to hear that you feel so bad.......please take Marks advice and check out the statin. I suffered, like you, for many years on high doses of statins, the hurt all over feeling especially neck and shoulders, then every muscle in my body. I aged tremendously and lost all interest in life. Also my angina episodes became more frequent.

I decided to do some research and found a site run by Doctor Duane Graveline.....from there I realized the statins were having an adverse effect on me. I took it upon myself(I dont recommend you to do this) to stop the statins for 1 month, and hey presto gradually the pain subsided and I felt 10 years younger!

As my cholesterol untreated is 13.5 I have had the biggest fight on my hands to make my doc listen to me, "If you dont take it you will die". and my reply was....I would prefer one year of good quality of life than 10 years feeling so bad.

The end result is that i agreed to take 5mg of rosuverstatin to control the inflammation in the heart and I no longer concentrate on the cholesterol numbers.

I dont suffer any more with the disabling effect of high doses of statin, I also take 120 mg of Coq10.

I dont recommend you follow my example, but, I do recommend you check out the statin.

I hope you feel much better soon

Lavinia x

[Thomas45]

23rd June 2013 Update.

I didn't take Losartan yesterday (without my doctor's permission) and am noticeably better today, I've just walked almost normally downstairs and ate some cereals with milk and made a hot drink (Barley Cup - caffeine and coffee free). Whereas yesterday on a scale of 1 - 10 with 10 the highest my pain level was about 12, today it's about 7. Noticeably lower back pain has eased considerably. Still have neckache and headache, and weak legs. Will continue drinking water to flush the nasty residues out of my body.

[SRMGrandma Volunteer]

Hi Thomas,

I am late to the conversation here! I am glad you are feeling better but I am concerned about your not taking your Losartan. Abruptly stopping a BP med can cause something called rebound hypertension. In other words it can really make your BP jump up, which you don't want.

The statin is most usually the cause of the muscle aches. How long have you been on it?

The rivaroxaban does have a short half life and the effects should be gone now that you switched to the warfarin.

Statins, do however have a long half life. So long in fact that many of us dose them just every other day to get essentially the same benefit, yet avoid the side effects. Maybe you could talk to your physician about that. I would rather have my patients on an every other day statin than ever missing a daily dose of their BP medication.

It's frustrating to try so hard to do everything to feel well and nothing seems to be working. I hope Monday brings you to an appointment with your doctor. I hope you will take your Losartan today.

[dirose in reply to SRMGrandma]

Like Thomas, I have developed similar aches and pains over the last two months, in all the same places, and feel aged ten years, Was young for my age and feeling fit before. T he only common thing with Thomas, is Warfarin. I take antibiotics for cystitis, one of these tried was Ciprofloxacin which is known to cause tendon pain (I now know) I stopped this after three days, and changed to another antibiotic, Just don't know what has caused this onslaught of pain, and aching muscles.

[skary]

I'm on Rivaroxaban and so far am ok; it was changed from Warfarin as that caused an instant flare up of IBS... then was taken off from bisoprolol to Diltiem....BPM went to 180+..so am now back on Bisoprolol..... feel tired but no aches.Our bodies are used to one med then it's all change to a new one; not surprising we get reactions to this .

I do know that Co Enzyme Q10 does help with statins ; and a friend took them to alleviate hopefully the aches & pains from statins....for her it worked. She also asked her doctor if plant sterols tablets would be ok to take too....it was and has dropped her cholesterol level down considerably.

Check with your doctor or cardio and see what they say .....fingers crossed for you

Nikki

[Thomas45]

Good morning SRMGrandma.

I've been taking Simvastatin for several years, and have been pain free the whole time. The reason I stopped Losartam was because of my logic, which might be flawed.

25 days ago I was pain free taking a combination of Flecainide, Simvastatin, Doxazosin, Ramipril and Warfarin and had been for 4 months on that combination.

24 days ago Warfarin was replaced with Rivaroxaban, and the aches and pains started. After 5 days I discussed the pains with a doctor over the phone and agreed to continue taking Rivaroxaban for a fortnight. The pains worsened

About12 days ago I was put on Losartan in place of Ramiptil which was causing rashes and itching.

After 18 days on Rivaroxaban 5 days ago my doctor took me off Rivaroxaban and put me back to Warfarin at my request.

The pains eased until yesterday when they were as bad as they have been. Most of the time I was on Rivaroxaban I was just existing, staying in a chair or bed.

Logically Losartan is the culprit, but Rivaroxaban was also a culprit as I was in pain taking that for 5 days prior to taking Losartan.

I will get my BP checked today at a Walk-In Centre, and hopefully get my INR checked. Also I have an appointment at my local medical centre to get my BP checked tomorrow, I had two phials of blood taken from me on Thursday to send off to the lab for checks. The walk-in centre doesn't open until 2pm so I'll have a couple of hours more sleep.

[paolina]

You said you had taken Warfarin with food, I was told to take it 2 hours before eating (I'm in Italy), but I have seen on various web sites that it should be taken before eating preferably as I was told 2 hours before. Could this be one of the reasons why your INR levels are not stable? Pauline

[Offcut]

I have been on warfarin since 1992 and do not seem to connect anything to it. However since being on sotalol my breathing has got worse and I am tired and my joints hurt more than they did. But my GP seems to think that is better than the AF I was suffering with?

I have been on Atrostatin 10mg since 2002 but was and still am 3.5 level.

I hope you get it sorted out soon

Phill

[Vivante]

I have been thinking of asking my GP to change the warfarin, after reading what has happened to others, I have decided to stick with it and continue to monitor my food intake closely. I wish you all the very best, I have been feelin g very sorry for myself, but Some of you are worse of than I am. I wish I could help,

[Thomas45]

23.10, 23rd June (68 tomorrow!)

Thanks for all your comments. I saw an out-of-hours doctor at 8.30pm.. He gave me 2 BP tests, about 25 minutes apart, highish but going down. I'd had a frustrating evening just before seeing doctor. Needed money for hospital car park, and hole-in-wall machine ate my card and gave me no money!

I'm now doubling up on my previous low dose of Doxazosin, 2mg to 4mg. I take it for enlarged prostate rather than for BP reduction.

Have another BP test tomorrow and will try to get a same day doctor's appointment to follow up on my visit tonight.

I still have some aches and pains, but nothing like the last 24 days.

[Lorna_od]

I have been on Xeralto for 6 months. I am 48 years old. After 3 weeks of taking the Xeralto my hands would get numb when sleeping & now I have painful hands, feet & elbows. Pain eases when I begin to walk. But my hands are weaker like I have arthritis. Before starting the. Xeralto I had no pain. I have told the doctor about this & he said it was unlikely. I have been very tired as well. I finish in 7 days & we shall see if the pain goes away.

[PEnomore in reply to Lorna_od]

Hi Lorna-od,

I know this is from a year ago, but I am experiencing similar things. I've been on Xeralto for 4.5 months after diagnosed with a PE. I am a very healthy 51 year-old, work out all the time and love being active. In the 4 months, I feel like I've aged overnight. All my joints are stiff, and I have the numbness in my hands that you spoke of during my sleep. Did the pain and these symptoms go away after you stopped taking it? I am so hoping you will say yes. My Dr. was also saying my symptoms were unlikely to be caused by Xarelto, but the timing is just too suspect. Thank you for responding.

[WifeConcerned in reply to PEnomore]

Hi Penomore;

Recently my husband had a PE, [we don't know why, no surgery or medical issue that would cause it] and during this we learned that he has a hereditary blood disorder called  Factor V Leiden which is a mutation of one of the clotting factors in the blood.  This mutation can increase your chance of developing abnormal blood clots, and he will most likely need to be on blood thinners for life.

He was prescribed Xarelto and is experiencing body aches, he feels weak, he has had some numbing in his hands, feels stiff, he is always cold, and it is taking a toll on his mental outlook.    He doesn't feel like his himself and it is affecting his overall mood.  He has been on Xarelto for a little over a month.  He is taking no other medication. 

We too were told by his Dr. that it is unlikely the meds causing his symptoms, but I call BS!  Like you, my husband is 49, he is very active, he is in good health, and life hasn't been the same since taking Xarelto. Are you still on Xarelto?  Did you ever feel normal on the meds?  

I am looking for answers and would appreciate your feed back. 

Thanks!

[PEnomore in reply to WifeConcerned]

Hi WifeConcerned,

Just got your message. As it turned out, I tested positive for a genetic mutation as well called G20101A ... very similar to what your husband tested positive for, which effects blood clotting. After my 6 months on Xarelto, I chose not to continue, even though my doctor advised it. I'm not suggesting he should do the same, but I didn't want to be 30 years on a drug that is relatively new.

My PE was a result of this genetic mutation (which I didn't know I had) and being on the birth control pill, which was adding estrogen to my system. I probably shouldn't have remained on the Pill at my age anyway, for fear of blood clots, but with the mutation, it made my risk for a blood clot even greater. I immediately went off the Pill and went into fast-track menopause resulting in a double-whammy of losing both my own body's estrogen as well as that from the Pill. In retrospect, it could very well be that the extreme stiffness and joint pain I experienced (as well as depression) was from estrogen depletion due to menopause. However, I don't really know since it was all happening at the same time. 

I'm finally back on track with working out and feeling fairly normal in my activities (a year later), so again, I'm not sure if it's because my hormones are slowly finding some semblance of balance or because I'm no longer on Xarelto ... or both! I do recall that over the course of my 6 months on Xarelto, my joint pain did recede some near the end. But overall, I was feeling like the Tin Man that needed an oil can.

Since I'm not continuing with blood thinners at this time, I am vigilant about any sensations behind the knees that remind me of sensations from before the PE, when I likely had a blood clot forming behind my right knee. At the time, I could barely bend my leg and I experienced some pain. But being active and such, I thought it was just the result of my activities. Ironically, I'm having some weird pains in my left leg, so I'm going in for an ultrasound on Thursday to just quell my fears of having a possible blood clot in my left leg. I figure it is worth my peace of mind, esp. since I've elected to not go with drugs. I'm even considering ultrasounds a few times a year just as a precautionary measure while I'm not on blood thinners. If for some reason, I do have a blood clot in my leg, then I will be facing going back on the blood thinners ... to be continued!

I don't know anything about the differences between Factor V and G20101A and why one might be more of a concern than the other, but I do know another person with Factor V who is on blood thinners ... not sure which one. Perhaps it is more necessary? I just don't know. (I will ask her what medication she is on ... I think it's Warfarin or I would've drilled her on Xarelto!)

My only thoughts going forward for you, if your husband must remain on blood thinners, is to try Warfarin and see if he has less reaction. That was another choice I was considering, even tho' it is a pain to get blood draws to manage the dosage. 

I do feel for your husband 100%, if that's worth anything, and I applaud you for reaching out. I would have liked that kind of support. It is a big deal to have a PE, even if it is caught in time and arrested. I understand the more depressed outlook too, and am thankful this is finally turning around (after a whole year!). Please tell him to just keep trying to work out and get out in nature as much as he can and monitor everything. After 6 months, perhaps he can try going without as well. In the meantime, try Fish Oil Omega 3, Magnesium, Calcium, Vitamin D and Move Free as supplements.

Hope this wasn't too much rambling...if other questions come up, please don't hesitate. I would enjoy keeping in touch.

Best of health to you both!

[Jenniferpill in reply to WifeConcerned]

Hi I actually just found out today that I have this same clotting disorder. I got a DVT about two weeks ago they did testing and found this out. I'm 28 years old and healthy. I'm on the Xarelto as well and have never felt so sick, I have pain in my leg I'm tired all the time this is so crappy. I see it's been a year since this post, how is your husband doing on the meds now? Did it get better with time?

[iris1205]

I had a similar reaction when I started Xarelto /Rivaroxaban, but the joint/ injury pain diminished with time over 2-4 weeks. As all have said, so difficult to say what it is as we all have different body chemistry... keep up with your doctors until you get some relief! Best of luck

[PEnomore in reply to iris1205]

Thank you for your encouragement! I have lots of accelerated joint pain and stiffness that I did not have before taking Xarelto. I am hoping I will see these diminish, if not disappear, when my 6 months of this medication is up.

[Thomas45 in reply to PEnomore]

In my case the pains didn't go, so I was taken off a BP medicine, then all my medicines apart from Flecainide, and my asthma inhalers. 5 weeks later, after numerous blood tests, I was diagnosed as having Polymyalgia Rheumatica, which is an auto-immune condition - the body thinks it's being attacked so it inflames many of your muscles, causing pain. There's no cure, but eventually the condition will rectify itself. The treatment, to reduce the inflammation and pain is steroids. I'm down to 5mg a day and will try reducing again soon.

I hope your condition improves.

[PEnomore in reply to Thomas45]

Thomas,

How are you these days? I am off Xarelto and feeling close to back to normal, but it's hard to tell as I age! I had a person write to me about her husband and it got me back in this thread and made me want to check in with you to see how you are.

PEnomore

[Thomas45 in reply to PEnomore]

I'm much better now thanks. Still reducing my steroids. Now down to 3.5mgs a day I have knee problems and have lost muscle power to get up from sitting, but it doesn't affect my mobility once I'm up. I don't ache anymore, well only when I'm getting up or sitting down.

[EngMac]

I am sorry to hear of all your challenges. Drugs are good but some cause problems with some people; and probably the more of them you take, the more likely you will have interactions. I suggest that you read the drug sheets for each drug or find the info on the internet. I was given two drugs which the drugs sheets say should never be given together; yet, the doctor did not think this should be a problem. I guess he thought his knowledge was better than the drug companies who made the drugs. I stopped all my AF recommended drugs and am fortunate that natural remedies and avoiding triggers allows me to avoid AF most of the time - more than when I was on drugs. I think it takes several weeks and maybe longer to get the influence of a drug out of your system.

With regard to your nose, I had problems that could be similar. A surgeon did not recommend surgery - a surprise. I take a tablespoon of coconut oil each day and now my nose is fine for the first time in 60 years. I always thought I had a cold; but no, just a messed up nose and sinuses. Check out coconut oil on the internet.

I know not everyone agrees that supplements are worth the money; but, I think some work for me; and so far, much better than the drugs that I have tried. Some work for the prostrate as well and better than drugs. If you can eliminate some of the drugs, maybe the ones that you really do need to take will work better. This health stuff is a bit of a crap shoot and doctors try, but like many other things in life, you know your symptoms best and with much effort you may find a better result, using drugs or supplements, especially if your doctor will let you fully participate in your health regimen.

[Hennerton in reply to EngMac]

What are you using in place of warfarin or one of the new ones? Is there a natural remedy I could use that you are finding effective? I have recently had my first episode of AF and am extremely reluctant to start on anticoagulants. So far I am taking hawthorn and magnesium oil. Any advice would be most welcome. Thank you.

[Thomas45]

i'm back on warfarin at my request. My GP was willing to put me on another of the new anti-coagulents but I preferred warfarin. I bought a Coaguchek testing machine so I could check my own INR. The warfarin nurse phones me from time to time for a reading.